XMRV test by Cooperative Diagnostics

I happen to have a relative who went to college with the founder of Cooperative Diagnostics, Brent Satterfield, and knows him well. The company and the test are legitimate, they are using a proprietary rapid PCR test that is merged with a real-time analysis of the DNA in order to identify even slightly mutated versions of a retroviral pathogen.

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I'm curious to know how they verify their test before coming to market. Have the obtained blood that was confirmed to contain this, and run their test on it. After what happened in Germany with the prostate tests, I'm nervous.

And frankly, I'm beginning to wonder about VIPDx, and how well their lab techs know how to do the WPI test.

I spent $300 on a PCR test for Chlamydia pneumoniae a couple of years ago which came back negative (despite me having the disease). Subsequently I found out that the lab had never ever found a positive in a single CFS patient!! I wish they had told me this before testing. I really feel like I got ripped off with that test.

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Without taking this thread too far off topic, what lab finally gave you a positive for CPn? After that positive test, did you go to a third lab to verify the results?

I make this post not to take us off topic, but to bring up the topic of verification.

It looks to be directly from Cooperative Diagnostics. ProHealth offers no comment on the test or that WPI is not endorsing it or anything about VIP offering the original tests. It does come off as a recommendation from ProHealth. I think this is unfortunate.

Thanks a lot for that Kurt. I'd also like to know if (after a while of testing) they will disclose what kind of percentage they are finding positive in their patients. This is really the key question in any commercial test - how likely is the test to find XMRV?

I spent $300 on a PCR test for Chlamydia pneumoniae a couple of years ago which came back negative (despite me having the disease). Subsequently I found out that the lab had never ever found a positive in a single CFS patient!! I wish they had told me this before testing. I really feel like I got ripped off with that test.

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I understand that concern, and am sure Coop.Diagnostics will reveal their findings. The founder is very committed to CFS as he has two close friends with CFS, so this is a bit of a personal mission. Their advantage is a technology that allows the rapid design of new PCR tests. So XMRV was a bit of a test for the company, to see if they could get a test up quickly, and they succeeded.

Dr Satterfield also told me that he expects their PCR positive rate to be higher than WPI's due to its higher sensitivity. Also, they are working on an antibody test and will add that eventually, that is slower to develop.

I'm curious to know how they verify their test before coming to market. Have the obtained blood that was confirmed to contain this, and run their test on it. After what happened in Germany with the prostate tests, I'm nervous.

And frankly, I'm beginning to wonder about VIPDx, and how well their lab techs know how to do the WPI test.

I should be waiting. But I just can't. <sigh>

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Good point. Dr Satterfield told me their test was verified by spiked-in genetic material (known XMRV positive DNA), and their sensitivity was 100%, and specificity was 100%. He also said that in clinical settings there are samples with very low viral levels, and that is where their method helps. They expect to have a positive rate higher than the 67% WPI finding due to their test's higher sensitivity. I realize they do not say much on their website yet, everything is happening rapidly with XMRV and they are probably inundated right now. Since I have a connection to Coop.Diagnostices I will see what I can find out about their verification process.

Good point. Dr Satterfield told me their test was verified by spiked-in genetic material (known XMRV positive DNA), and their sensitivity was 100%, and specificity was 100%. He also said that in clinical settings there are samples with very low viral levels, and that is where their method helps. They expect to have a positive rate higher than the 67% WPI finding due to their test's higher sensitivity. I could say more but would need his permission (I can get that if you really want to know more, I realize they do not say much on their website yet, everything is happening rapidly with XMRV and they are inundated right now).

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Kurt, better yet, please invite Dr. Satterfield to participate in this forum himself to explain the specifics of what his lab offers and how it may benefit the numerous potential customers who. Alternatively, if he has a press release on his offerings, I will be happy to post it here.

Kurt, better yet, please invite Dr. Satterfield to participate in this forum himself to explain the specifics of what his lab offers and how it may benefit the numerous potential customers who. Alternatively, if he has a press release on his offerings, I will be happy to post it here.

I just spoke with VIPdx on the telephone today. I was told they were working closely with WPI and would have a test ready by the end of November. They asked that I leave my name, address and phone number with them....I did so. The woman on the phone said VIP would contact me as soon as the test was available, and then I could have either my Primary doctor, or Dr. Lapp (Charlotte CFS doc) call them and order it. I asked for both tests...about $650. I am going to stick with WPI and their Lab, VIPdx. Just my opinion, as I feel many labs out there are going to ty to cash in $$$$$ on any test they can come up with because this is "hot" right now. I think we need to be patient.

I just spoke with VIPdx on the telephone today. I was told they were working closely with WPI and would have a test ready by the end of November. They asked that I leave my name, address and phone number with them....I did so. The woman on the phone said VIP would contact me as soon as the test was available, and then I could have either my Primary doctor, or Dr. Lapp (Charlotte CFS doc) call them and order it. I asked for both tests...about $650. I am going to stick with WPI and their Lab, VIPdx. Just my opinion, as I feel many labs out there are going to ty to cash in $$$$$ on any test they can come up with because this is "hot" right now. I think we need to be patient.

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This is indeed a valid concern and an excellent reason why Dr. Satterfield or one of his representatives should consider addressing this forum.

When I contacted my doctor's office about Cooperative's test this was their response:

"I wouldn't go for this one right now. It makes quite a bit of difference how the testing is done. I don't know anything about this lab, and what their experience is in testing for XMRV. It is pretty easy for money to slip away looking for answers in all kinds of places. Until more is known, I would stick to reputable sources. Not that they aren't, it is just unknown for now."

I'm undecided about this lab. But I would like to point out that they use the polymerase chain reaction (PCR) technique to amplify a single or few copies of a piece of DNA. So it might not matter that they are using a small sample.

Don't do it! I talked to Dr. Peterson - absolutely do not do that test. VIPdx is the lab they're using. Its available now.

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I have to respectfully disagree with this. Neither Dr Peterson nor Dr Coffin can know anything about this specific XMRV test, or they would not have made those comments. They are obviously basing their views on what they know about testing in general. Yes, usually a PCR test takes a long time to build up. So a company coming out with a test this fast is suspect.

But here are the facts, I have studied this issue and this company since I know someone connected with them. Dr Satterfield worked for years with military and governments (US and foreign), including the US Dept. of Homeland Security, on various rapid test development technologies. His company, Cooperative Diagnostics, bases its methods on his work for those agencies and they have proprietary rapid test development techniques that are proven. They have the ability to accurately amplify samples far beyond ordinary PCR tests, so they really do need less sample. This is all explained on their website. Also, they have experience that probably helped them given their previous work in retroviral testing for HIV, so this was easy and fast for them. They had less learning curve probably than most other labs.

Also of interest, Dr Satterfield helped with rapid Anthrax test development, I don't know the details but can find out if anyone wants. I have suggested to them that they need to communicate better their capabilities and credentials. They are a young firm and I believe they are exactly what we all hoped would happen after the WPI announcement, highly capable scientists in industry becoming interested in CFS. And they are committed to CFS, not just XMRV, I think we will be seeing much more of their work in the near future. They have mentioned to me that they are involved in a study and hope to have a journal publication out relatively soon.

The comments of Dr Peterson are understandable as this is competition for his testing (the VIP lab is probably paying a hefty licensing fee back to WPI). But I think it is unfortunate that such acclaimed scientists would so rapidly dismiss the very thing we need in the CFS world, the growth of services for people with CFS. They should not be afraid of a little competition.

Based on what I know there is nothing to fear from purchasing the XMRV testing from Cooperative Diagnostics. I wish more people would do their homework here. Just read the bio on Dr Satterfield, on their website for the details of their capability. This is a serious group that wants to make a difference and is applying their expertise, just as WPI has done for us. In fact, we have rarely had Ph.D. biomedical engineers that capable interested in CFS, I know of no others. I hope we do not chase them away before they have had a chance to make the difference that they can, they might produce answers other firms can not, as they are committed to diagnostic testing and have unique capabilities in that area.

Dr. Coffin was alarmed that they were offering this test. He seemed incredulous. He warned against it. I gotta assume he would know.

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I can assure you, 'he doesn't know.' I was a researcher myself before CFS. And scientists have opinions and make off-the-cuff remarks that sometimes do not hold up. I know because I have been there and done that. Ask Dr. Coffin for data to back up his assertion about Cooperative Diagnostics. I am pretty certain there is none. It was probably an opinion based on what he knows about test development, but clearly not based on data about CD's capabilities. (see my prior post for details).

If I am proven wrong in this, I will retract this assertion, but for now, this appears to me to be just an unfortunate and probably also libellous remark with no basis in fact.

Thanks so much for all the info you have provided here. I ordered the test form Cooperative, got it in the time frame they said, the test kit was professional, sent my blood in fedex overnight, included in the cost. I am now waiting the results via email any day now.

If this test is a good one, then our UK friends can order this one, which they cant do through VIPdx. I am in touch with a fellow UK sufferer, who is also waiting results from Cooperative.

I haven't yet heard any valid scientific criticizism of Cooperative's science, and am not competent to do it myself. They say they developed the test in 16 days, after the Science/WPI announcement, and that their strength is in fast development of diagnostic tests, apparently by computer/math modeling, if I understand it correctly. This seems to shake up the more conventional researchers who are used to experimenting on mice...very slowly. If this computer modeling method of designing diagnostics is valid, it represents a great leap forward in this field. Since Dr. Coffin admits to researching retroviruses for some 40 years, could he have become set in his ways?

From examining their website, I do have some raised eyebrows. In one place they say:

"The actual prevalence of XMRV in the CFS community could be anywhere between 0% and 100%."

But their press release for the XMRV test goes on about how it MAY help with diagnosis of CFS, and several other diseases.

And one of the papers by Dr S is about the rapid detection of bioweapons. Hmmm...

dmarie4301, thanks for being our "guinea pig" here, and thanks ahead of time, for sharing your results, and if possible the results from your contact in UK.

I can assure you, 'he doesn't know.' I was a researcher myself before CFS. And scientists have opinions and make off-the-cuff remarks that sometimes do not hold up. I know because I have been there and done that. Ask Dr. Coffin for data to back up his assertion about Cooperative Diagnostics. I am pretty certain there is none. It was probably an opinion based on what he knows about test development, but clearly not based on data about CD's capabilities. (see my prior post for details).

If I am proven wrong in this, I will retract this assertion, but for now, this appears to me to be just an unfortunate and probably also libellous remark with no basis in fact.

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Hi Kurt,

There seems to be no harm in waiting to see if this test can deliver the kind of accuracy they say it can. If it's a good and accurate test, we will all be very happy.

Incredulity cannot be libelous and not recommending the unknown and unproven is simple common sense.

I really hope this test is as good as they say, for so many reasons, but many of us cannot afford to pay to prove/disprove that contention.

There seems to be no harm in waiting to see if this test can deliver the kind of accuracy they say it can. If it's a good and accurate test, we will all be very happy.

Incredulity cannot be libelous and not recommending the unknown and unproven is simple common sense.

I really hope this test is as good as they say, for so many reasons, but many of us cannot afford to pay to prove/disprove that contention.

peace out
koan

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Koan,
So you think Coffin and Peterson were simply being incredulous. They STRONGLY discouraged people from using the C.D. test, and used the credibility of their position to warn PWC against the test, implying that only the WPI sanctioned test could be a good test. An incredulous response would have been to state that they had no knowledge of the test, whether it was good or bad, and not make any recommendations about C.D. They said that using the C.D. test was a bad idea. That type of statement from an MD or Ph.D. with knowledge of XMRV in this situation carries a lot of weight and can definitely damage the reputation of the target, in this case C.D.

From Wiki - "In law, defamation—also called calumny, vilification, slander (for spoken words), and libel (for written or otherwise published words)—is the communication of a statement that makes a claim, expressly stated or implied to be factual, that may give an individual, business, product, group, government or nation a negative image. It is usually, but not always,[1] a requirement that this claim be false and that the publication is communicated to someone other than the person defamed (the claimant)."

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I do not want to belabor the point, just wanted to point out that slams against C.D. in a public forum like CFSAC, as well as slams in private that I have heard of back channel, create a negative image for C.D without any basis in reality. And that does look like defamation as defined in Wiki above. I am not a lawyer, maybe someone who is a lawyer can clarify that.

But, as you said, people will learn over time whether the C.D. test holds up. We will also learn whether the WPI results hold up. The point is to get accurate results, not the results we would like to see. Having multiple labs involved with XMRV testing will increase the overall chances of getting accurate responses. They will each be held to task, so to speak, by the competitors. Maybe Peterson does not like the idea of competition, but I sure do. Over time there will be many others, what did WPI expect when they published their study in Science? Competition is a good thing.

...and asked him what he based his negative reaction on, whether it was the speed of getting a test out there, and whether he does not credit their method of computer and mathmatical modeling with producing an accurate test. We'll see if he answers.

Kurt, I agree that competition is a good thing. If the CD test is accurate, it is especially important to those of us who don't live in the US and can't supply freshly drawn blood in the time frame required by WPI.

As for Dr Peterson, if WPI thinks it's OK for them or their licensees to be selling a test to the public at this time, I don't see why another company shouldn't do the same. Both he and Dr Coffin should refrain from jumping to the conclusion that speed equals inaccuracy and/or opportunism, without some facts to support that inference. If they have such facts they should share them with the public.